Please Treat Me As a Person, Not Just Your Patient

Dear doctor,

Do you see me? Or, I guess the better question is, how do you see me? When you see the wrinkles on my face, my curves, scars on my body, my pale face and missing hair, can you see me? Do you hear me? What are your first thoughts upon entering the room and shaking my hand?

When I sit in front of you, I feel like a person yearning for improvement, for change, and to feel healthy again. I hold my breath, hoping you will have an answer — a piece to the puzzle that has been missing for far too long. You might look at me in our short appointment, but what you see on your computer screen is not a true chronicle of my life. You see a list of diagnoses that are a part of who I am, but they do not make or break me. My chronicle provided vital lessons of my value, my meaning, and granted me hope for the future. I am doing the best I can, and I can do better. Every minute of every day, I can do better and so can the people around me. We can improve our doctor-patient relationship together. I am not expecting a miracle from you, nor do I want you to insinuate that I need one. I am expecting to be treated like a person and want to know you value my life and experience. I want you to believe in my healing as much as I do, if not more. Walk with me on this journey. We don’t need to hold hands, but I may need to lean in.

I know you are often overworked and need to read up on my health history a few minutes before or during our appointment. I can sense you breathing deep, clenching your jaw, mumbling to yourself as you read my patient notes and chart. Know that I see you. I’ve sensed when doctors lost patients and then need to walk into my room and try to focus on what I am saying. I can sense when you feel we don’t have enough time as you glance down at your watch. I know the hospital tends to book our time in limited increments. You have a lot of patients and I am one of them. I am a woman. I am a mom. I am a wife, a teacher, a friend. I am a student of life. I have a husband and two teenage sons. I push through chronic pain, fatigue, head pressure, nausea and other symptoms because I know I have a purpose and passion to fulfill it.

I had an appointment this week with a provider. She came in, introduced herself and familiarized herself with my history. I could see the amount of overwhelm on her face, as she seemed frazzled while she asked questions, eyebrows furrowed and rubbing her hands together. As she noted that my health issues were likely far outside her scope of care, I could tell her face changed and she had tears in her eyes. I reassured her I had specialists helping me. She stepped on a likely well-meaning soapbox and said, “you’ve been through a lot this year; it must be so hard for you, your family, and your kids, especially with your age, and oh my, how you must be grieving.” She was breathless as she spoke, rattling things off as I struggled to get a word in edgewise. I sensed she was attempting to provide some sort of empathy and compassion. Then came the twist: “Have you thought of talking with a good therapist?” After listening to her, I wondered if that is how she thought I should be feeling… grieving, miserable, discontented. She assumed I was overwhelmed by the last year and I am in some way broken or beyond repair. I sensed she was not capable of believing me when I said I was working through it. I am a proponent of therapy, the importance of mental health education and the need for funding. Sound mental health is priceless.

In that moment, I did not appreciate her attempts to project how she was feeling about my health onto me, perhaps due to her inability to manage my health care. I did not appreciate her attempt to profile me based on the ten minutes she spent in the room while she glanced at a computer screen and not at my face, as though turning toward me would make me more human. It made me feel uncomfortable that I needed to reassure her and calm her down. I explained to her that “it is was it is, and I can continue focusing on it and not handling it or I can accept it and change how I react.” It doesn’t mean I don’t have bad days or moments when I need to reach out to a loved one and ask for support. It doesn’t mean I don’t cry when I hear bad news, but I give myself time to process and then try to work on my least favorite skill: radical acceptance. I will admit, I’ve had rough days and weeks when getting out of bed seemed like a monumental task, physically and emotionally. However, I’ve tried to embrace my suffering and seek meaning in it. I decided I would rather put my energy into smiling, focusing on my kids and making sure they thrive than focus on negativity or a “why me” attitude. I’ve had a chance to learn about my diagnoses, start treatment, and I am working daily on gratitude and acceptance. What I experienced in that moment was an aspect of patient profiling all too familiar.

Patient profiling has a long-term impact on health care and quality of care. A doctor supposes that because the patient has a lot going on medically, that the patient is having a hard time handling it. However, they don’t ask a single question about how the patient feels emotionally or ask about a support system. When the patient offers information, a provider may not listen to what the patient is saying and suggests they have an underlying issue with stress and suggests medication. Or in this case, the provider seemed more overwhelmed and incapable of dealing with the patient’s medical issues than me, the patient.

Four years ago, I experienced patient profiling with a neurologist. He ordered a scan and it was read as a “normal brain MRI” by a radiologist. The neurologist told me the MRI was clear and I should be happy with that. He suggested that since my scan was clear, it must be a stress disorder causing symptoms and I needed to learn how to handle stress more effectively. I left the appointment feeling uneasy because I felt like there was something missing, since I experienced a significant change in my health. I trusted his expertise. I listened to the neurologist and changed my changed my diet, found better ways of coping and focused more on life balance and relationships.

After a couple of years, my symptoms were still present, and some became progressively worse. In 2016, I had a blood clot in the back of my head and when I had a scan, lo and behold, there were two brain tumors. When I went in for a follow-up, I was told two brain tumors were missed on the scan in 2014. Although it would have been hard for someone not trained well to see them, especially without contrast, they were present and growing. I did need time to work through it emotionally. I could have remained angry or bitter after the misdiagnosis. Instead, I try to remind myself I am likely coping more effectively because I made changes in my life. A friend often reminds me, “you are more resilient than you realize.” I wonder what would happen if doctors focused on patient resiliency during appointments. Would it frame the conversation differently if we put my strength and perseverance in a positive light? Would it change the level of care? There are a lot of “what if” questions one could ask in my position, but it wouldn’t have changed the present. Now, I look at present and future care through a new lens.

When the implications of the misdiagnosis came to light, I asked to be transferred to a new neurologist who had a completely different perspective on my health and course of treatment. My first appointment with him was about an hour long and it gave me hope. He listened, and I felt like he cared deeply for me as a person. I ended up having two brain surgeries in 2018, one for a cerebrospinal fluid leak and one to have a stent placed to decrease the pressure in my head. When I suspected a seizure recently, my neurologist suggested I go into the ER. The doctors at the ER saw the stress disorder diagnosis on my health history my former neurologist entered in the system and said I was hallucinating. I had repeatedly told them I was tingling, had head pain and changes in vision. My eye felt like it was vibrating and another patient commented on it in the waiting room. I was in hypertensive crisis. There was one fellow who said it could be seizures, but when the attending started insinuating I was hearing voices, I knew they were not taking things seriously and were not going to examine me further or do an EEG. I requested discharge after ten hours in the emergency room. It turns out I was having seizures while awake and in REM. If it had not been for my neurology team listening to me and ordering proper tests after the ER visit, I likely would have been ignored once again because of the diagnosis on my file from four years ago. In all likelihood, the seizures were probably happening for a while. I am now preparing for gamma knife treatment for a brain tumor in October and I am on anti-seizure meds.

Dear doctor, please treat me as a person. Yes, I have strong emotions and bad days, but I am managing them well. I know many patients need support. I’ve been there too and know what it is like to feel like a pressure cooker. Be approachable to your patients. Discuss the subject with care and respect without making a patient feel overwhelmed. Recognize your emotions, biases and assumptions so they do not have an impact on patient care. Confer with colleagues. Patient profiling had long-lasting ramifications for my health care. I am not alone.

So, if you see me, know that my curved hips carried my two beautiful boys, one who barely breathed at birth and the other who had rubella in utero who doctors suggested we abort. I held my head high then, too, and placed my trust in a power far greater than my own. The scars on my back are from spinal surgeries and pain management procedures. My pale face is from nausea and chronic pain, as well as pushing myself too hard. Recognize that when I am more fatigued, I might seem more emotional. Part of my smile means I am wincing through pain and struggling to sit up as we discuss symptoms and a treatment plan. The other part of my smile is because I had a joyful morning with my kids. I used my strength to make breakfast and tell them I love them and give them a hug and a kiss before they left for school, so I can come to your office with a few minutes to spare. I am cherishing each moment with them. Know that before you came into the room, I was taking a moment to breathe deeply, to be grateful for this moment and this day.

My acceptance is an ongoing process of knowing I am doing the best I can each moment of each day, but that there is always room for improvement. If you see any darkness or any hints of despair, know I have my off days. I am human. Know that nobody else can really understand my suffering, nor do I want them to. I do not want to deepen their grief. I am OK with taking this on to bring them joy, love and peace.

Outside of the confines of these four white walls with loud clocks, bright lights, lab coats and whispers of wishes for better health, we both have lives. Help me fully live mine. Please, take the time to see me and value me and my life, not just as a name on your calendar and as a list of diagnoses on your computer screen. Look me in the eyes and listen. I am ready to walk with you on my journey.